Thursday, August 26, 2010

Today I felt numb. Sad and numb. The reality of our situation over the past month has been on my mind, gnawing at me periodically during the day.

I am losing Sean. I always seem to notice this in summer, when the heat pours in and stills the days. When the summer is coming to a close and my husband and I look at each other like runners on the last lap, our hamstrings locking up, our bodies falling forward and our knees and elbows bursting with scrapes and pain. It's as if we have fallen to our knees trying to make it to the end -- not concerned anymore about our time or placing but only about being able to stay in the race and cross the finish line. It's the very least we can do for our son.

I am losing Sean. I am with him all day. I try to finish laundry, sweep the floor, make a phone call, clean up the dishes and he is there, next to me, his big eyes staring up at me and his voice, always a stammer, "Y-y-you talk to me, Mom?"

I try to let go of the heat and mess and stress and give him my attention, slowly I answer, "Sure, Sean, what do you want to talk about?" knowing full well what our conversation will be.

"Is there a Pixar movie that starts with a T?"

My mind scrambles and answer Toy Story.

Then he asks, "Why don't I have an L in my name?" I tell him he just doesn't but tears spring to his eyes, "But I want an L in my name."

We've gone as far as "renaming" him as Seanly -- he also desires a Y very badly, too.

He goes on and on about his favorite topics.

"I can kayak in the deep blue ocean?"

"Remember that stupid time in Kaneeta?" (how could I forgot -- it was Mother's Day weekend and he had a meltdown because it was too crowded.)

"I can like the Justice League?"

"Is there a person's name with a Q?"

"What's your favorite sea creature?"

I have answered these questions and others like it probably over 1,000 times (Yes, you can kayak. Yes, I remember Kaneeta. Sure you can like the Justice League. Quentin, Quinn, Quimbley, Queenie. Dolphin, I guess.) And so it is that I find myself losing bits of my son and bits of myself, swirling quickly down a dark drain with no hope of stopping it.

My neighbor stopped by to check on us. Kind and discreet. She came up my back porch steps, her eyes tender and I felt my own wet.

"How are you guys doing?" she asked.

I felt my heart tear a bit. She has been our neighbor for five years, ever since we first moved to Portland. Her daughter, older than my kids, played with Sean, outlined his hands and feet with chalk at the block party, helped him carve his pumpkin at our first Halloween and went swimming with us in the summers.

I said to her, "I didn't know it would be this hard."

I am lucky to have such kind good neighbors who try to rally around us. Some of Sean's behaviors are really intense and hard to contain. She let me know that she loved my kids, loved hearing Sean playing earlier that morning with his Superman cape chasing the cat around the yard. She told me that whatever we needed that she and her family were always there for support, help or an ear to listen.

"Thank you," I said. "Thank you very much."

And yet I still feel like I've let everyone down.

Yesterday, Sean wanted juice and I told him no more juice. He threw a bottle at me and I found myself boiling with rage, my back throbbing from where the bottle hit. I grabbed him by his shoulder and pushed him into his room. He thrashed and yelled, opened his window and tossed a couple of books out onto the lawn. I ended up having to subdue him by getting him on his back, sitting over him to pin his legs and holding his hands down above his head. I just held him, watching the wildness leave his eyes and face.

"I will let go, but you can't hit me, you understand?"

He nodded, "I understand."

He went to touch his hair and I thought he was going to hit me and I felt my whole body flinch and I covered my face. When I took my hands away, I saw him for the little boy he is, flushed cheeks, damp red hair, bright eyes, "What's wrong?" he said, his voice soft like butter.

I tucked him into bed that night and when he drifted off to sleep I held his hand and prayed to somebody, anybody to release him from all the struggle and pain and frustration that he has had to deal with his entire life. His small, sweaty hand, the pads of his palms swollen with blisters from the monkey bars, so small and full of promise and I couldn't understand why he had to carry such heaviness in his lifetime.

"Give him a chance," I whispered over the hum of the fan. "Please, he's my boy and I can't bear losing him."

Sunday, August 15, 2010

The other day my husband came home after driving the beloved loser cruiser (powder blue mini-van -- a model of car I swore I would never own let alone drive...) was in peril. It had smelled funny for a few weeks and was leaving sweaty spots on the driveway. We kept putting more oil in it realizing that there was a leak of some sort. Finally, the light came on to tell us to cut the crap and take the car into the mechanic.

Luckily, my husband prefers to ride his bike to work so being down a car wasn't a major problem. And luckily it turned out to be a minor problem -- a crack in a gasket and a sensor working improperly. The loser cruiser, with its 110,000 miles and counting, would continue to roll forward. Paid off, covered with Cubs, Blackhawks and In and Out Burger bumper stickers, a generous dent on the back door, and riddled with scratches along the sides, the van would continue to be a part of our family life -- toting kids to school, weighed down with rafts, tents and coolers in the summer, and dolled up with snow tires chugging up the mountain passes for skiing and hockey tournaments.

I thought how nice it would be if we humans had Check Engine Lights illuminate in our chests, reminding us to take it easy, slow down and mend the cracks. I think our family has been sailing along most of the summer with our invisible Check Engine Light on and yet we haven't pulled off the road, popped the hood and let the cloudy steam rise off the boiling engine to get a better look at why we feel so out of sync. It's a luxury we really haven't had.

Summer has been hard. I am feeling lost in the long days. I spend most of my day with Sean trying to keep his moods even, his body regulated and his thoughts happy. Meanwhile, I have neglected my writing, chores and most sadly to me, my friendships. It's as if we have to put so much on hold. Our child doesn't do well in crowds, doesn't like to be in public much, can't socialize well and even trips to the pool or parks have ended disastrously with Sean being out of control or yelling or hugging strangers.

My older son is struggling with this. Sean is getting bigger. He is harder to manage. And he's quick and fast and can't control his impulses. We take turns watching him but inevitably he gets away from us, whether its jumping on a person sitting on a bench or hugging a woman's knees, most trips out can end badly.

My husband and I have grown thick skins -- practically Teflon. By my oldest is getting to a point in his life where he is much more aware of the dynamic and struggles with the love he has for Sean and the embarrassment that he often feels at how his brother behaves. It breaks my heart sometimes. I know my oldest is kind and good and tolerant, mostly because he has had to be in order to be a part of this family, but I can't help thinking how some days must be very tough for him and how I wish I could make it all better.

So I guess we all continue down this bumpy road, our Check Engine Light beeping and blinking and yet summer doesn't afford us the time or opportunity to fix ourselves. We have to keep making little quick mends until fall when school begins and we have the luxury of time. Twenty seven days and counting...

About Me

Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.

Helpful Resources

The Mom Blogs

Mt. Hood

Autism Study: Simons Simplex Collection Project

What is the purpose of this study?The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.

Whom should I contact to get more information?Emily Champoux, Project CoordinatorToll free: 1-800-994-9701 or 206-616-2889 Email: emchamp1@u.washington.eduAdditional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html